Patience and Kindness

Perhaps it’s because of the winter solstice dark and cold, or because 2019 was a particularly bad year for some people, or because being floxed SUCKS, or because of fear, or because nuance can be difficult to convey via the internet, or because of a million other potential reasons for ill moods, but it seems to me that people have been particularly impatient, rude, and even hateful on the floxie facebook pages and groups–including the floxie hope page and the fluoroquinolone wall of pain page, both of which I manage. I’m pretty decent at ignoring unpleasant things and avoiding confrontation, but the comments that are mean-spirited are starting to bother me. Perhaps in recognition of the holiday spirit or the change of the year (and decade), I would like to make a request – can y’all please be nice?

No one knows the perfect way to go through fluoroquinolone toxicity. No one knows the correct way to cure this. Everyone is experimenting and trying their best. Some people try things that they hope will be helpful or curative that have hurt others. The people who try these things are not stupid or trying to rub an adverse reaction in anyone else’s face. Sometimes knowledge of best practices shifts and what someone tried years ago is now known to hurt floxies. It stinks, but it happens. There’s no need to belittle people for what they tried years ago – or what they tried yesterday. People are doing their best to heal with the information they have. Feel free to give more information, but I would like to ask people to please be thoughtful when “correcting” others.

A common criticism on the floxie hope facebook page is that posts are old. Yup – some of them are. This site has been around for 6.5 years – since June, 2013. I put older posts up on the floxie hope facebook page because I figure that some people will still get value out of the posts. I sincerely hope that they are helpful, hopeful, or otherwise valuable to some of the people who see them. I also don’t think that 6 years is that long, or that a 6-year-old post is less valuable than a 6-hour-old post. However, if some of the information is out-dated or incorrect, I apologize. I did the best I could at the time I wrote each post, and I’m still doing my best now. I try to post accurate and backed-up information, but sometimes I’m wrong about an assertion. It happens. I’m a blogger. This site is my blog, not a peer-reviewed journal. I have always tried my best to be correct, but I don’t have the resources to verify any of my assertions about the causes or effects of fluoroquinolone, so please take everything I write with that grain of salt.

I also put up old posts because, frankly, I’ve gotten tired of doing fluoroquinolone research, putting together pieces of information from various sources, and formulating thoughtful and informative posts. I don’t have the emotional or intellectual energy to do that like I used to. I apologize. I wish I still had that energy and passion. But, to be honest, it has waned. I miss the passion that I once had, and I feel like the posts I have written in the last year-ish are not particularly inspired (or interesting). I would LOVE to have thought-provoking, interesting, inspired, passionate posts on this site, and I invite anyone who is interested in putting a post on floxiehope.com to send me what they’d like to post. This site has a decent-sized audience and it’s a good way to say what you want to say about fluoroquiolone toxicity to the community. Please let me know if you’re interested in writing for floxiehope.com (through either clicking THIS LINK or on the pic below).

One more thing that is a bit tangential – Facebook is cracking down on a lot of sites and groups, and I hope that the fluoroquinolone toxicity community on Facebook doesn’t get hurt by the crackdowns. I don’t think I’m breaking any FB rules, but even without thinking I’m breaking any rules, I’m still having some issues. This notice is currently on the fluoroquinolone wall of pain facebook admin page:

I clicked on the “learn more” link and, as far as I can tell, all rules have been followed. But maybe I did something inadvertently that was against facebook’s rules. Or, maybe they’re wrong. Either way, facebook has a massive amount of power to affect our reach and our ability to spread the word about fluoroquinolone toxicity, and if they shut down the pages and groups related to fluoroquinolone toxicity, well, that will be an awful shame. Facebook has facilitated the growth of this community (as I’m writing this, the Fluoroquinolone Toxicity Group on Facebook has 10,761 members). It has facilitated people sharing information about this illness, recovery, coping, etc. I am grateful to Facebook for all that it has offered. But what it gives, it can take away. I’m slightly worried that a wrong move can result in the disillusion of a major meeting-ground for floxies. I hope that we can continue to use facebook, and it would be a shame if we couldn’t and had to start over on a different platform. If you have a problem with something that is posted on the floxie hope facebook page or the fluoroquinolone wall of pain facebook page, please contact me rather than reporting it to facebook. Maybe then we can stay in their good graces.

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21 thoughts on “Patience and Kindness”

First Lisa, (and always) thank you SO much for what you do. Many of us would be out here floundering (or maybe not here at all) were it not for you and floxie hope.

Second, old posts ARE valuable. For one thing, they are not old to someone who is newly floxed. Also, we may be experiencing something new and may not have paid much attention to an earlier post because it didn’t directly effect us, but now it does. Good information is good information…it doesn’t have an end date.

As for facebook…ugh. Don’t get me started. I am sorry they did that, and good luck finding an explanation. I had posted something health related—can’t recall now if it was regarding vaccines or something else…and they blocked it. This was something that included studies in it, and FB gave NO reason other than to say it was not verified, or something to that effect. This is astounding considering all the fake news and Russian bot stuff that runs rampant on facebook.

Thank you again for all you do…and for hanging in there all this time.

Thank you, L! I appreciate your kind words and your support so much! This site is 1000000x more helpful to people because of the information and insight that you, and the other people who comment on the site (especially those, like you, that comment regularly), provide. Thank YOU for all you do to support this community as well!

Lisa – I second everything that L has said. This is an incredibly valuable site . I come here everyday to see what people are saying and to try and help sonebody if I can. Without further scientific research into FQs ( which seems to be sparse) it is just not possible to be writing “red hot”new posts and you certainly should not beat yourself up about it. The scientific info I have gleaned here I have presented to my doctor and I know he has changed his views on FQs.
As for Facebook – call me cynical or paranoid but I see the filthy hand of Pharma here. How much stock does Zuckerberg have in Bayer I wonder?

I likewise second what I said to L above for you. Your insight that you offer in the comments on this site are so greatly appreciated!

I’m glad that your doc has changed his mind about FQs. Good job informing him!

I think that Zuckerberg is one of millions of people who are true believers in pharma. I wish we weren’t so dependent on his platform. It has been a wonderful platform for floxies in many ways… but dependence isn’t good… it leaves us vulnerable. We shall see where it all goes.

Please Lisa, don’t give up. I know how you feel, believe. Been cursed at and just wanted to help. Sigh. Advocating is sometimes about being disappointed, I know. Let’s mail soon. Or talk on Facebook. Hang in there. You are very important to soo many people. Love Myti Miriam etcetera

Thank you so much, Myti! I appreciate all that you have done for this community as well! Your testimony that was featured in the Nature article helped the community to gain so much credibility. I know that you have helped many (probably hundreds-thousands) of people through the mess of FQ toxicity. Thank you!

I’m not giving up. I’m just tired for now. Hopefully some of my energy for advocacy will come back at some point.

Lisa, You are a gift to all of us who are struggling seeking answers and solutions to our having been victimized. You are our angel. We respect your decisions, whatever they are because of the tremendous goodwill you have fostered upon us.

It means you need a break for a while. You have done and amazing job and many are building on the knowledge you have accumulated. Step back and look at the fluoroquinolone groups on Facebook and you will see how we all have built on the knowledge you have shared. Take time to reflect, you deserve it.

Lisa,
I just want to say Thank you for all you have done to help people through Flouriquoinolone toxicity. Without your blog and many stories of hope and possible solutions, I don’t know how I would have made it through to the other side. I am now 14 months out and doing so much better than I could have ever imagined in the beginning of this nightmare. One thing I know for sure is that if we don’t take care of our bodies through rest and healthy foods symptoms come back. Although I don’t frequent FloxieHope or FB wall of pain, it’s best for me mentally to separate myself from that association, people need to realize that nobody owes them, people have suffered like just like them, they have struggled & searched for healing. You have done so much Lisa and are appreciated more than you could ever know. It’s ok to step back from all of this, life goes on and you have done more research to help us than anyone out there. Happy New Year to you & yours❤ Sandi

Facebook is now signaling that it will ban all conversations or content that contradicts “official positions” on any topic. Those topics will very rapidly be expanded to include GMOs, cancer treatments, water fluoridation, politics, elections, abortions, pesticides and nutrition.

First, thank you so much for continuing ANY efforts to maintain this site and the Facebook pages. In a few days it’ll be 2 years since my ordeal with floxing and I cannot imagine how much more difficult it would have been without having this site to turn to for hope. I understand the lack of energy, I used to try to post my recovery habits and routines on the FB page and respond to comments and concerns, but as time passes it gets harder and harder to find the energy and time to continue to dwell in a space where one no longer resides. This is how it feels, at least for me. Regardless of the reason for the limited energy available to maintain a steady effort, the site is still here and still provides hope, which I believe was all it intended to do in the first place. Thank you, Lisa, your efforts have made real change in some people’s lives!